The good news we got today is that Sunley does not need to continue using oxygen; the bad news is that she is not better -- the oxygen simply is not helping. We did not get the news we were hoping for, but of course it could have been worse. We've decided to go ahead and schedule Sunley for her pre-Fontan Cath and her Fontan surgery, and as soon as possible -- like in the next few weeks if we can swing it. In fact, the doctor asked if we brought a packed bag (we did), because she wanted to get us on the Cath schedule NOW. There weren't any openings because the hospital is VERY full, so we came home and they will call us with a date soon. This was not "supposed" to happen this way -- the pre-Fontan decline is usually gradual, and we were expecting to have much more time to prepare. I wish we knew what caused this. The doctors said that her heart looked the same as last time, when we got the news that she was doing so well. I can’t help but wonder if this would have happened without that stupid tiny cold she caught. We’ll never know, and I won't spend much time on the what-if’s. As I said in 2018 when we got her diagnosis — Job never got the why, but he did get an “I AM GOD AND YOU ARE NOT,” and that’s good enough for me.

Right now, her team is trying to get her scheduled the same week that my sister is having her first baby, the big 2 kids are starting in a new part-time school, Davis is turning one, and we are in the very chaotic final stages of our home build here in Oklahoma. I can't imagine a worse time to do this surgery. But, I am aware that I am unaware of the big picture that I have trusted God with all along. Over the last month, as Sunley has continued to struggle, I have just prayed "Your timing, Your timing" over and over again...and I'm still waiting for my feelings to follow my words. Because I definitely don't feel like this is good timing.

To be honest, I am extremely angry, and I have nowhere to put my anger. I'm not angry at God because I know He will carry us. I'm not angry at the doctors, because they didn't cause this. I'm just angry that we're having to do this in such a rush, and I'm angry that things didn't go as we hoped. I'm angry that Sunley's perfect heart is not supported by this very broken world, and I'm so angry that she can't thrive here without SO much medical intervention...even though I'm incredibly, deeply grateful for those medical interventions. Angry, grateful, sad, hopeful, and very very tired.

Part of the reason I'm so upset is because this whole thing has been extremely reminiscent of Sunley's diagnosis process, which you can start reading about here. We had 3 misdiagnoses, and at one point, Dallas Children's told us that she was biventricular, and went on and on about how terrible single ventricle life was -- only to call us two days later with the devastating correct diagnosis. This last March, we were given this amazing news that Sunley would likely be fine for a year, only for her to plummet 3 months later. It all just feels eerily similar. And while I know it will all be ok, I'm just angry over the roller coaster. We made plans. We signed up the kids for an awesome new part time school, and for soccer, and ordered more chickens (can you ever have enough chikens?). I started planning my last first birthday party for Davis and pictured what this year could be after such a rough 2020.

We must be doing really good work for the Lord if Satan is trying this hard to knock us down. Jesus come soon.

I'm not angry with God, but I'm so disappointed and frustrated with my own lack of understanding. I thought maybe He would do something big and we wouldn't need surgery yet, and I'm just so sad that we didn't get an answer like that. I have peace because I know He cares for me and hurts with me, but I'm so so sad.

I never complain about comments made to us, because I never want people to feel like they might say the wrong thing. But, please, do not say "At least this surgery will be over with and behind you." If one more person says that to me, I might just lose it. Doing this surgery at 4 years old would have been much, much easier on all of us -- at least according to my limited understanding of the picture in front of me. It is what it is, and I won't mope around about it, but I certainly preferred a different plan. And I doubt this will ever feel "behind me." Sunley’s care is palliative, and I don’t want it sugarcoated. This surgery creates a cardiac anatomy that can be very hard on the body, but it’s our only option.

Somehow, we have to make plans to be in Houston very very soon, and take all of our kids - we desperately want to stay together this time. We have to figure out who is coming to help with the three healthy kiddos (praise God, we have lots of offers!), find where to stay, etc. I can't make those plans until we have an official date, and even then, our date may get pushed. TCH is FULL of patients, and canceling procedures left and right. It's possible that we could rent a place, take our whole family there, and then the surgery could get postponed 3 times. A full hospital also means a lot of "pushing for discharge," which can be extremely annoying and nerve-wracking.

Now for my prayer request. There is a very small possibility that Sunley's heart has developed some collateral vessels that are contributing to her low numbers. They will likely coil those off during her pre-Fontan Cath. Doing that MIGHT make her numbers higher. IF her numbers get higher after her Cath, and IF it seems like waiting for the fontan would be beneficial, then that is something that could happen. I don't know if that's really what we want to happen, but please pray that whatever happens in that Cath will be what's best for Sunley long-term. There are so many possible outcomes, and everything is a series of delicate judgement calls. We need God to guide us and her doctors in these decisions.

Please also pray for our family to enjoy these next couple weeks before surgery. We are going to try and come up with a “mini bucket list” for our family and just soak in all the joy we can until our next chapter. I’m predicting lots of snuggles, and way less cleaning.

I’ll let everyone know when we have a date!